Hi.

Aug 14 Getting Ready for our Trip to Cincinnati

I have been a bit lost about what to write this week. No. I have been a bit lost about what to feel this week. My head and heart are already in Cincinnati; it is hard to think and write about life here and now. Perhaps that is why I left the only bag of groceries I bought at the check out today. Sigh.

A friend sent a text message of encouragement earlier this week, "I think you are going to be stepping into a whole new level of excellence that you have not seen in Nathaniel's care before." Instead of productive blog writing time on the computer, I have spent my night shifts doing silly things like comparing 2015-16 US News and Word Report reviews of St. Louis Children's Hospital to the reviews Cincinnati Children's Hospital. Silly because reading reviews cannot validate my friend's hypothesis. Silly because reading reviews cannot promise a diagnosis or treatment plan. It just fills up empty moments of long waiting and substitutes genuine hope in Christ to meet Nathaniel's and our needs with hope solely in an institution and men.

Waiting is almost over. The pre-visit preparations are in full swing now. Cincinnati called five times yesterday; once already today. One long phone call was with a nurse from the Areodigestive Clinic updating Nathaniel's history since our conversation a couple months ago. We also reviewed next week's appointments.

Nathaniel will be seen by six different departments while we are in Cincinnati. Monday is primarily a Cardiology day. He has two heart tests and will see a Cardiologist. We also have an afternoon clinic appointment with the Anesthesia department. Tuesday he will have a high resolution chest CT in the morning and we spend the afternoon with Pulmonology and GI doctors. I am looking forward to this shared clinic. I have struggled getting my concerns about Nathaniel's vomiting, secretion management, and aspiration answered locally. GI can tend to claim the vomiting is secretion and cough related, and Pulmonology can tend to claim the vomiting is a stomach issue. The result is that Nathaniel's systems are looked at separately and nobody seeks a solution. I fight at every appointment and hospitalization for him to be evaluated as a whole person and for the interplay between these two systems to be considered. The opportunity to speak with both disciplines at the same time about Nathaniel's symptoms has never happened before. I have pages of notes and questions prepared.

On Wednesday Nathaniel will go to surgery and be evaluated by three doctors: the GI and Pulmonologist we meet on Tuesday and an ENT. Each doctor will preform their own diagnostic scopes and tests, but be present together to discuss what they see and determine if an airway reconstruction surgery is possible. They will take biopsies and samples from his GI tract and lungs that will help determine conditions that need to be resolved for Nathaniel to be a candidate for surgery. Nathaniel has never had this sort of evaluation. I am hopeful that the collective thinking will lead to a solution. The nurse today spoke highly of the doctors assigned to Nathaniel. "I don't like to brag about our hospital," she said, "but Nathaniel's team is pretty amazing. He has been assigned outstanding specialists from each department. He is a lucky guy to have gotten these three doctors." Her words offer assurance, not only in the physicians' record of excellence, but also in our God who puts these things in place for Nathaniel. We need both: God's intervention and excellent doctors. From the moment we heard of Nathaniel's birth, we have been aware that God's intervention comes through the minds and hands of physicians. We move forward with a continued dependency on a God who sees and loves this child and works through people to bring His purposes in Nathaniel's life.

We would appreciate prayer for travel safety and all our appointments, but specifically for this surgery time on Wednesday. We have been well warned by our local team that Nathaniel's airway is very complex, and that we may have to sacrifice one or more less important functions of the trachea to preserve a more vital function. Discussions ranking the importance of eating or talking as less important than breathing have been gut wrenching. They are conversations that tiptoe on the edge of picking a quality of life for Nathaniel. We would prefer not to chose. Rather, we want to pray big and bold for healing and for wisdom on Wednesday. Please pray with us that the Cincinnati doctors will see a solution for making Nathaniel's airway more stable that also provides lung protection from aspiration and allows him to use his voice.

A secondary prayer request for Wednesday's surgery time is the insertion of tubes in Nathaniel's ears. He has failed hearing tests recently and has been dealing with chronic fluid in his ears. We are thankful that the Cincinnati team is addressing this issue for us and thus preventing another surgery immediately upon our return.

Nathaniel will stay Wednesday night in the hospital's critical airway unit. He will come out of surgery with a sensor implanted in his esophagus that will test for reflux and measure PH - more data that will help determine if he is a candidate for surgery. We have a quiet day with no appointments after discharge on Thursday, but return to the hospital on Friday to be seen in the Genetics clinic.

We are staying in a hotel downtown near the hospital. Nathaniel will be with us at the hotel every night except Wednesday. Our older son, Peter, is traveling with us. He will sleep during the day and monitor Nathaniel at night. His participation in the trip is a gift to Rich and me, and will allow us some opportunity for nightly rest so we are prepared for the long days at the hospital.

I am glad today is Friday. Our trip is close enough now that packing makes sense. It feels good to do something physical. After writing letters and emails of appeal and making phone calls to advocate for this trip for five months, actually putting clothes in a suitcase brings both extreme joy and some tears of apprehension. The whole process - the planning and working towards an end goal while at the same time dealing with a million small details and an assortment of emotion - feels on the same scale of throwing our daughter's wedding for four hundred guests. Going to Cincinnati is big. Answers we get there could be life changing for Nathaniel. For all of us.